Our Story

OUR PERSONAL JOURNEY THROUGH CARDIOMYOPATHY…

Everything was falling into place; Vanessa Katherine, our second daughter, was born Dec 1, 2004. Joining her two-year old sister Victoria, the team was formed and our storybook family was headed toward “happily ever after.” As parents of the two absolutely cutest pair of girls the world would ever see, we flew from one family group to the next throughout the holidays showing off our newborn baby girl and our completed family. Looking back, I wish we would have just sat at home twenty four hours a day absorbing that feeling because our naiveté about the world would soon be torn from us.At six-weeks of age, Vanessa just wasn’t sleeping as soundly as you’d expect with a newborn. She would quietly moan while resting and seemed really difficult to burp. Janie knew it was just gas, but took her to the pediatrician for some peace of mind. Via x-ray, the Dr. confirmed there was gas in her stomach and insisted we don’t put her down until she burped. It sometimes took 45 minutes to get that burp out, but it was working like a charm.A few days later the doctor called back; she happened to get part of Vanessa’s chest cavity on the x-ray and thought her heart looked enlarged. She suggested we bring Vanessa in for a follow-up. Following an EKG and chest x-ray, we were told to report immediately to Texas Children’s Hospital in Houston and there would be a cardiologist at the emergency room to meet us. Granted we were in a panic, not understanding what was going on, but occasionally these things happen in all families. We told each other, let’s go see the doctor, we’ll get it fixed and everything will be fine. Little did we know as we walked through those emergency room doors, were entering roller coaster of our lives. It would be a three month journey of the absolute highest hopes and the lowest depths of despair, over and over. Vanessa was diagnosed with childhood heart disease. It was determined that she had Dilated Cardiomyopathy; specifically, Left Ventricle Non-compaction to which the prognosis is very grim. However, Vanessa wasn’t showing any physical signs of heart-failure, so there was no prognosis. The doctors simply wouldn’t talk other than to say, the diagnosis isn’t good, but she seems to be doing fine.If you do a little research you’ll find that 50% of those diagnosed with cardiomyopathy either die or have a transplant within five years. But we were never told anything like that; we were told, let’s see how she does, she’s on cutting edge medication and we caught it early (and the roller coaster chugged up the hill). We were told there are a lot of kids with worse hearts than hers. Shortly thereafter, we began seeing the signs. She went from easily putting down three to four ounces of milk to where she wouldn’t drink but one without seeming to get too tired to finish. She began to sweat when feeding; indicating that just eating was straining her heart and becoming a real workout (and the roller-coaster began its descent).The next two and a half months were a dizzying merry-go-round between appointments, doctors, nurses, emergency room visits, trying to keep things together at work between doctor conferences, updating relatives and friends, barely being conscious from the lack of sleep, and forcing ourselves to reach to the deepest depths of our being to make the absolute best decisions for our little baby girl.Immediately following that first ER visit we spent two-weeks in the hospital as medications (up to nine of them given as often as six times a day) were scheduled, then a week at home, another trip to the emergency room, another four days at the hospital, a week at home, a horrifying trip to the emergency room followed by twenty-one days in the hospital to get through the flu and have a feeding tube put in. Finally, all seemed under control and we packed for home. All we needed were the final echocardiogram results from the doctor saying it was ok to go.Instead of getting that ok, two doctors came in to deliver the most gut wrenching news yet; we were told she wouldn’t likely make it through the night without checking back into the pediatric intensive care unit (PICU) where an IV medication could be administered to help her heart squeeze harder. But she was acting fine!I specifically remember her smiling and acting so normal as we took her to the ICU to be stuck with another horrifying IV needle. It was the absolute worst as we witnessed that IV; then came the daily heel sticks, blood draws seemingly for everything, the constant beeping of the heart monitor and constantly watching it for any sign of change, the blood pressure cuff that would awaken her every time it seemed she would actually fall asleep. It seems we were constantly making arrangements to be off work, and for Victoria to spend yet another week shuttling between our parents and other family members.We finally did get to take our baby girl home one final time. After insisting we could handle the IV medication, the thirty plus oral doses, that we could arrange for monitors and daily nurse visits, and that we simply wanted the opportunity to make her and our family as comfortable as possible.We had ten terrific days of smiles, watching Vanessa reach and grab for toys, rolling over, and babbling with her big sister. For ten wonderful days we again resembled a family with hope and the possibility that Vanessa would outgrow her eating troubles and live a pretty normal life short of being a marathon runner.Those ten days were the absolute top of the roller coaster climb. On April 6, 2004 we took Vanessa for what would be her final echocardiogram and checkup. She was having real problems keeping anything in her stomach. We were given different reflux medication. The checkup went pretty well; aside from the reflux she seemed to be acting fairly normal. But then, as the echo was read the doctor simply said, “It doesn’t look good and we need to admit her to the hospital for monitoring. But for the most part she’s acting fine; if we can just get her through these little episodes and hopefully to the one year mark we could expect to see some real improvement.” Once again, the roller-coaster seemed on an upswing. However, a mere six hours later everything began shutting down.Janie and I spent one final beautiful night with her, my sister once again rushed the 175 miles Ausin to Houston to simply be there (we can't thank her enough), and the chaplain joined us for most of the evening. We spent the whole night holding her, praying, singing songs, reading bedtime stories and telling our sweet baby that it was ok; that she was going to a better place. We told her it was ok to go, and that she was meant to be an angel rather than here with us.While perceived to be somewhat rare, cardiomyopathy is the number one cause for heart transplants and is linked to more than 3,000 deaths annually in young adults between 15 and 25. Often, these are sudden deaths occurring at an athletic venue where young hearts are pushed to their breaking points. Current research suggests this is a genetic disorder passed from one generation to the next often undetected as many kids make it to adulthood where physical exertion generally tapers off. Infant fatalities from cardiomyopathy are often written off as SIDS, or a virus; which in reality, only became deadly due to the underlying cardiomyopathy.So why am I telling this story; quite simply because there are things we can immediately do to help these kids. We need to raise awareness of this treatable but potentially fatal condition. We need to establish a heart screening program for all our youngsters, especially high-school age athletes. And most importantly, we need to support research and development into a cure for cardiomyopathy.Our goal by setting up a Foundation is simply to honor our daughter, to allow her spiritual potential to develop and do great things here on Earth through us and her ever growing Foundation Family. Who knows, perhaps she'll inspire more in her 4 short months than many of us do in our entire lifetime.

Vanessa’s Big Heart Foundation is an exempt public charity under IRC Sec. 501(c)(3)

Vanessa’s Big Heart Foundation is committed to funding research into the causes and cures for pediatric heart disease. In the process we also hope to help "Little Kids With Big Hearts" better enjoy their lives. Each year Team "Big Heart" will run the Houston Marathon to raise money in support of this mission and to keep Vanessa's memory alive.